Music, football, Dyslexia, Cancer and all things London Borough of Barnet

Wednesday, 14 May 2014

Guest Blog - Cancer and being alone - By Rev Gillian Straine

The Barnet Eye kindly
asked me to write a guest blog on cancer, ‘so that people with cancer know that
they are not alone’; that is not alone
having been diagnosed and treated, and perhaps survived into remission, with one
of the most common diseases in the western world. ‘Most common’ and ‘lonely’:
why do these words so often go together when talking about cancer? Why is there
so much loneliness in the cancer community of which I am a fully signed up
member.

I remember when I was
sitting through yet another excruciating chemo session, bored and sickening, an
elderly woman, who I assume was being kind, came over after her treatment and
squeezed my 21 year old hand and said she was very sad to see young folk who
were ill.What had I done to deserved it?,
she pondered. I remember this incident clearly, just as I remember the day I
first went to the doctor, the kindness of the doctors and nurses, the fear in
my parents eyes, the chemotherapy and the day the doctor told me I was in
remission. All of that I could have predicted, if I had thought about it,
before I was ill. What I wouldn’t have predicted I don’t think, was how tough I
would find surviving. For I found that life after cancer was not all that it
was cracked up to be. It’s tough, surprisingly, to ‘win’; it is not a
completely sweet victory to beat the big C.

Cancer is a diseased
burdened with taboo, still today. I grew up in the north east of Scotland which
is more conservative than these sunny climes, and there I met many people of
the older generation who wouldn’t even say the ‘c word’. I knew conversations
were happening about me in hushed tones and people were keen to ask ‘how I
knew’, so that they might too spot the ‘deadly beast’ that grows inside so
silently. The sad thing is that even with survival rates increasing, cancer
still wrongly means ‘death’ when even the word is intoned. Doctors say that
they would rather diagnose someone with heart disease, than cancer, even though
the former many be more dangerous.

After six months of
chemotherapy my advanced Hodgkin’s lymphoma went into remission, where it has
remained for twelve years now. And of course, it goes without saying, that I am
thankful. But I struggled and I wanted to find out why. And I think it might
have something to do with the cancer narrative that we are supposed to go along
with.

So us lot in the
cancer community are forced, however kindly, into a storyline that goes a
little like this. You must be strong, fight the disease, and then win. The
story that we are supposed to fit into is this: shock of diagnosis, spreading
the terrible news, facing gruesome treatment, into remission, happily ever
after, hopefully with a new positive outlook on life which helps us to overcome
great challenges, run marathons, change career and find beauty in each sunset. And
then quickly go back to normal, so you can stop everyone around you feeling
uncomfortable; having to speak in hushed tones is so very tiresome. We like the
Lance Armstrong story (well we did until we found out he was a lying cheat),
and like the idea, as Kelly Clarkson put it, that what doesn’t kill us makes us
stronger.

But I didn’t feel that
way. I was in remission, but I didn’t believe myself to be braver, or stronger
or more susceptible to glorious sunsets. I felt angry that I had to face my own
mortality, and sure I wanted to live, but I didn’t know what to do with it now
that I had it. Cancer had changed me. I didn’t bounce back into my old self.
Cancer had left an indelible mark. I faced that depression that so often comes
when identity crumbles, and the loneliness when you don’t fit in; I no longer
fitted in with my cancer free peers nor even into my old life story.

Why had this happened?
Well, I remembered that old lady in the chemo suite because I believe that she
exposed the whole problem with cancer. ‘What had I done to deserve it’? She
won’t be reading this which is a shame because I want to her tell that I had
done nothing to deserve it, and neither had she, me in my 21 years and her in
her 80 odd years. Cancer is not a moral disease which strikes the naughty. Somewhere
in our subconscious we have the idea that cancer is a punishment. It strikes
the childless woman, or the one who supressed their emotions. Susan Sontag
wrote about this is her book, ‘Illness as metaphor’ where she looked to
literature and saw that no ones dies a romantic death of cancer. The imagery is
of a disease that takes us over from the inside, a demonic pregnancy as St
Jerome put it in one of the earliest recordings of cancer. It is something that
we have to wage war against.

Let’s expose this as
wrong. For cancer is simply when something in our DNA goes haywire leading to
uncontrolled cell division. You could almost say that it is life on overdrive,
and it does kill, but it is simply nature.

Taboo or otherwise, it
is a disease like any other which takes us to the edge, and we are forced to
admit our own mortality. And it is lonely by definition to hang around at the
edge. First, this is okay. It has to be, right? Maybe we are the privileged few
whose faces are rammed up to the ultimate question of life and death and we can
work out our own answer. Cancer changed me, irreversibly. Physically, a little,
but mostly because I had to face my own mortality, and this is the lonely bit:
We must all die alone.

But we also have the
key to breaking the taboo and loneliness of others with the disease. Let’s tell
our story to them, and to anyone that will listen. Hold them up and let people
have a good look. It will make us vulnerable but something in the telling of
the story heals.I am sure there is
clever research somewhere that understands why this is. But if we tell our
story of cancer, of fear, and maybe the funny stuff too (laughing and cancer,
now that is a taboo), then we can not only find some healing for ourselves, but
we free others. Free them from their fear of the disease, and perhaps free them
to tell their stories too. And where there is freedom, then we can live more
fully.

Thank you Gillian for another reminder of the importance of finding the way to tell our story. Important to hear these unique, beautiful, ordinary stories, particularly as cancer once more hits the headlines following Stephen Sutton's death.

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About Me

Dyslexic punk rock guitarist, studio owner and author Barnet Eye blog, proprieter of Mill Hill Music Complex Studios. Born and raised in the London Borough of Barnet. Loves loud music, beer,curry and football and occasionally strings two coherent sentences together.
Prospective Lib Dem Candidate for Mill Hill Ward.
This blog is written and published by Roger Tichborne, 29 Millway, London, NW7 3QS

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